Americans heard a lot this campaign season about family caregivers. The federal government is making progress, but more needs to be done. I know about the importance of family caregiving; I’m alive today because a family caregiver advocated for me when I could not do that for myself.
At the age of 38, in January of 2005, I started having difficulty walking. My primary care doctor sent me to a neurologist, who sent me to the emergency room. I received steroids and a battery of tests. By February, I was using a cane. My short-term memory deteriorated. Then I had a seizure, and so began a 60-day hospitalization. After one more surgical biopsy, my doctors diagnosed me with paraneoplastic encephalopathy from Hodgkin’s disease, a rare autoimmune presentation of the well-known blood cancer. The diagnosis saved my life and forever changed it.
My illness also plunged my partner into being a family caregiver. David became as much a part of the care team as my neurologist, hematologist, and all the other specialists I saw. But unlike everyone else, David learned everything on the job.
David had to ensure that the hospital’s right and left hands knew what the other was doing. David’s only leverage was a health care proxy to act as my agent. One day I was scheduled for a test that measures blood flow in the brain three hours before a more important biopsy of my chest cavity around my lungs. A tense standoff ensued when a medical resident could not confirm that the special dye used for the test would not interfere with the biopsy. David did not sign the required consent form until my primary neurologist assured him that there wouldn’t be any complications from the dye.
David and I had help in many areas – outstanding health care providers, supportive jobs, friends, and families. But on the financial side of care, we were left largely on our own. I was still inpatient as the billing and collections systems began to churn.
My insurer drastically cut payments to most of my doctors for failing to follow “medical management guidelines.” In plain English, my doctors did not submit their bills with the required authorization code for my hospitalization. The hospital’s cancer center practice manager took the time to figure out what had happened. All the bills had to be resubmitted, but only after I insisted on it. And it’s a good thing, too, because, by my tracking, the retail price for my care was $622,628 in today’s dollars.
One of the scariest days in our health care journey arrived when I came home from the hospital. I was still liable to seizures and taking medications five times a day. David considered leaving his job.
Help came in the form of a home health aide. During Helen’s three weeks with us, I began to use a cane more and more, but I was still frail. Helen reminded me to take my medications, but she could not give them to me. She took me to doctor’s appointments and medical tests. We were fortunate; we had enough money to pay for Helen’s invaluable services ourselves.
While my disease was rare, David’s experiences as a family caregiver were not. There are roughly 53 million family caregivers in the U.S. The value of family caregiving stands at $600 billion per year. Nearly two-thirds of older adults will need assistance of some kind as they age.
This is why the 2018 Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act is critical. It serves as a national roadmap to do exactly what the title says. In September, the federal government released its progress report on a national strategy that contains 500 recommendations for all levels of government, employers, non-profits, and others.
Three efforts stand out as especially helpful. First, Medicare’s Guiding an Improved Dementia Experience (GUIDE) is a pilot that will provide participant family caregivers with a 24/7 support line, respite care, and other services. Second, with a program known as Principal Illness Navigation, Medicare will pay providers to better coordinate care and to teach family caregivers to become better advocates. Finally, the National Strategy could go further in protecting patients and families from financial calamity. But the Consumer Financial Protection Bureau is making progress by enforcing laws that prevent some nursing homes from requiring caregivers to personally guarantee that they will cover all bills before admitting a family member for care.
Against the odds, my doctors figured out my illness, and against the odds, I survived. But I can’t help but wonder if it all could have been easier if our only fight was for my life instead of fighting exhausting battles with the healthcare and insurance systems. It remains to be seen whether the new Congress will support President-elect Trump’s call to provide tax cuts to family caregivers. The new national strategy to help family caregivers is at least pointed in the right direction.
Scott Bane is a senior program officer.
